I am going bald to raise awareness for people with Down Syndrome —Paul Obidike

As young child Paul Obidike witnessed the death of a family member who had Down Syndrome and that experience changed his life forever. At the time of the incident he didn’t know the condition the child was going through until her death. For that reason he became an advocate for people with Down Syndrome and have been raising awareness of the condition within and outside the country. In this interview with AHAOMA KANU, he explains the reason he is going bald in celebration of people with Down Syndrome as the world celebrates World Down Syndrome Day on March 21. 

You have been an advocate for people with Down Syndrome, what inspired you into advocating for these special people?

The story of Vivian did. Vivian Okafor was born in 2001. She was the last of four children and was loved by her parents and siblings and lived in the city of Jos with her family.

Nobody noticed she had Down Syndrome until after a few days when she fell sick. Because of the severity of the syndrome, she was always taken to the hospital and her parents had difficulty in settling the hospital bills. Vivian suffered respiratory and heart disorders and at age 10 she had swollen legs and a persistent cough.

In school, Vivian was good with numbers and creative art. She could read letters and write her name. Because of this, she was smart enough to be in grade 6 at age 12. The school was impressed with her performance and decided to place her on scholarship; this was a great relieve for her parents.

Vivian was mostly excused and taken to the dispensary during emergency respiratory attacks especially when was hot the weather where she would be gasping for air. Vivian’s school in collaboration with her parents sought and contacted several Non-Governmental Organizations for support to foot Vivian’s medical bills and got few responses.

Though the support they got for Vivian did not last up to two years because the grants stopped. Because of this, her health deteriorated rapidly. She went back to coughing hard, breathing heavily and was gaining weight. She weighed about 68kg at 12. Vivian’s health continued to deteriorate due to insufficient medical attention.

In January 2014, it became severe and she couldn’t go to school again. In November, during the cold Harmattan weather in Jos, Vivian went to school one morning and suddenly, her legs became swollen and were misdiagnosed for Elephantiasis. She began to shiver and sneeze and cough hard and she began to gasp for air.

She was rushed to the school’s dispensary and was later taken to the hospital. Few hours later, it was reported to her school that she had been placed on oxygen because she went into coma. Vivian remained in coma for about 4 days after which she passed away. Vivian passed away because she didn’t get proper medical attention when she needed it the most.

The support and grants were cut off and her family could not afford the medical cost of taking care of her. She was an awesome little girl that never feared even when everyone around her was scared for her. She always wore a beautiful smile on her face and because of that she was loved by all.

In what capacity do you advocate for people with DS?

Mahatma Gandhi would say: Be the change you wish to see. The change I desire is that every person living with Down syndrome in Nigeria achieve their full potentials.

So on the platform of Heal da World initiative, I have dedicated my career to advocate to society and governments to create an enabling environment for them to live a better and fulfilled life

Why are you so drawn to people with DS?

They possess a rare expression of love, honesty, simplicity and happiness. So, if you come close, you would certainly be infected with this virus. I have got this virus. Do you want to be infected? Kindly, visit a person living with Down. If you have never, you are missing out.

So many people seem not to understand the condition Down Syndrome with many referring to them by some labels, how do you educate the society about people with Down Syndrome?

Very importantly, labels like disability, imbecile, disease, etc should be removed, because it is stigmatizing and discriminatory. Every human being has a value that transcends all human capacity to count or measure which confers upon them an elevated status that must not be dishonored or disregarded.

Down syndrome is a chromosomal disorder caused by an error in cell division that results in an extra 21st chromosome. So every normal person have 46 chromosomes, while persons living the condition have 47. This condition leads to impairments in both cognitive ability and physical growth that range from mild to moderate developmental disabilities.

Through a series of screenings and tests, Down syndrome can be detected before or after a baby is born. Although the likelihood of having a child with Down syndrome is determined by many factors, medical research has shown a very high risk with advancing maternal age (mother’s age >35 years old). For mothers who are older than 40 years, about 12 in 1,000 pregnancies result in a baby with Down syndrome.

Individuals with Down syndrome often have distinct physical characteristics, unique health issues, and variability in cognitive development.

In your advocacy for people with DS which areas have your work taken you to?

As a passionate advocate, with the support of friends and family, I have gone to South Africa, East, South, the west and northern part of Nigeria and I believe the whole world is my homeland, so I am ready to explore the whole world. I won’t stop until the good news of acceptance and inclusion is heard.

Tell me something special about people with Down Syndrome?

I love their on the spot sense of humour. They are born actor and actresses, marvelous on stage. They express themselves passionately.

People with Down Syndrome

I am aware that you partner with the Down Syndrome Foundation Nigeria, looking at the number of organizations dealing with people with DS, will you say they are enough? If not, what needs to be done?

I have been partnering with the Down Syndrome Foundation Nigeria since 2008. So far, in Lagos state, Homes/centres that cater specifically for persons with Down syndrome are very few. They are not enough.

I have been in  Lafia, Nasarawa State for over a year and from my findings, there is almost nothing known about persons living with Down Syndrome nor is there a home that caters for persons living with Down Syndrome in the north central region More awareness campaign of this nature should increase the knowledge about the condition. Government and individual should open centers/homes that cater for persons living with Down Syndrome.

The World Down Syndrome Day is celebrated every March 21, how are you going to celebrate this year’s event?

First and foremost, I have decided to go bald to mark this year’s event. The event is tagged: “Bald for Hommies with Xtra Chromies”. For over ten years I have never been on a low cut, but for the sake of WDSD 2017, I am going bald.  I would also be on air  at the Nasarawa Broadcasting Service to talk about this genetic condition and the stigma. I would use the social media to educate the general public.

You are going bald for people with Down Syndrome, how did you come about this initiative to raise funds?

I thought of what was dear to me, to give up for persons living with Down Syndrome; and it was my hair. I have never been on a low cut all my life but for the sake of persons living with Down syndrome, I am willing to give that up. I actually decided to go bald particularly for awareness creation and inclusion for persons living with the condition

What is your fund raising target and what do you want to do with the funds raised?

If in the process of this awareness creation, funds come in, I would expand on awareness creation strategy. I would use every medium of communication to Nigerians, if it involves printing fliers and posters in local languages, we would do right that. I won’t stop until every person in Nigeria knows something about persons living Down syndrome.

How long are you going to go bald for people with DS?

I intend to be bald the whole month of March. This is because it is the month we celebrate persons living with Down syndrome. As a revelation, it may become a tradition for me that every march, I would go bald.

Paul Obidike

What message do you want to get out there to everybody concerning people with Down Syndrome?

Every life is Sacred.  The sacredness implies that all human beings, at any and every stage of life, in any and every state of consciousness or self-awareness of any and every race, colour, ethnicity, level of intelligence, religion language, gender, character, behaviour, physical ability/disability, potential class, social status etc of any and every particular quality of relationship to the viewing subject are to be perceived as persons of equal and immeasurable worth and of inviolate dignity and they must be treated in a manner commensurate with this moral status. Show some love to persons living with Down Syndrome. Do not say disability, say “THISability”